Palser Sally C, Rayner Oliver C, Leighton Paul A, Smyth Alan R
Division of Child Health, Obstetrics and Gynaecology, School of Medicine, University of Nottingham, Nottingham, UK.
Person with Cystic Fibrosis.
BMJ Open. 2016 Dec 28;6(12):e012303. doi: 10.1136/bmjopen-2016-012303.
People with cystic fibrosis (CF) are susceptible to respiratory infection with Pseudomonas aeruginosa (PA), which may become chronic if initial eradication fails. Environmental acquisition and person-to-person transmission can occur. Respiratory PA infection is associated with increased mortality and more hospitalisations. This may cause patients and families anxiety and lead them to adopt preventive measures which may be ineffectual and intrusive. It is not possible to hold a conventional focus group to explore these issues because people with CF cannot meet together due to the risk of cross-infection.
To explore the perceptions of first respiratory infection with PA in people with CF and those close to them.
We designed an online survey, to maximise accessibility and avoid the risk of cross-infection. This established the respondent's relationship with CF, asked 3 open questions about perceptions of PA and a final question about the prioritisation of research. Responses were analysed using a structured, iterative process. We identified keywords, analysed these incontext and derived key themes.
Promotion through social media allowed respondents from any country to participate.
People with CF and those close to them.
Responses were received from 393 people, including 266 parents and 97 people with CF. The key themes were the emotional burden of PA (fear in particular); the burden of treatment PA entails and the need for accurate knowledge about PA.
Lack of knowledge and the health beliefs of individuals may promote fear of infection and inappropriate avoidance measures. Uncertainty about the implications of PA infection and the treatment required may cause anxiety. Healthcare professionals should provide clear information about how PA might be acquired and the treatment necessary, making clear the limitations of current understanding and acknowledging health beliefs.
囊性纤维化（CF）患者易感染铜绿假单胞菌（PA），若初始根除失败，感染可能会转为慢性。PA可通过环境接触和人际传播。呼吸道PA感染与死亡率增加和住院次数增多有关。这可能会使患者及其家人感到焦虑，并导致他们采取可能无效且侵扰性强的预防措施。由于CF患者存在交叉感染风险，无法组织传统的焦点小组来探讨这些问题。
探讨CF患者及其身边亲近的人对首次PA呼吸道感染的看法。
我们设计了一项在线调查，以最大限度地提高可及性并避免交叉感染风险。该调查确定了受访者与CF的关系，询问了3个关于对PA看法的开放性问题以及最后一个关于研究优先级的问题。使用结构化的迭代过程对回复进行分析。我们确定了关键词，在语境中对其进行分析并得出关键主题。
通过社交媒体进行推广，使来自任何国家的受访者都能参与。
CF患者及其身边亲近的人。
共收到393人的回复，其中包括266名家长和97名CF患者。关键主题包括PA带来的情感负担（尤其是恐惧）；PA治疗带来的负担以及对PA准确知识的需求。
知识的缺乏和个人的健康观念可能会加剧对感染的恐惧和不适当的回避措施。PA感染的影响及所需治疗的不确定性可能会引发焦虑。医疗保健专业人员应提供关于PA可能的感染途径及所需治疗的明确信息，明确当前认识的局限性并认可健康观念。
